My Life With Autism: What I Wish You Knew

15 years ago, I had an opportunity to work at a summer camp for children with special needs. I was scared. I was nervous. I did not know what to expect. The result was a life changing 2 months that has completely changed the trajectory of my career path and ultimately my life. I sometimes like my experience to that of the Grinch in that I too felt my heart grow 3 sizes that summer.

Since then, I have been a support worker helping individuals with diverse abilities in their homes and the community. I worked as an Educational Assistant in the school system, helped co-lead a summer camp for teens with Autism, worked as a social skills worker, coordinator for a pre-employment skills program for young adults with Autism and finally, I am a Registered Clinical Counsellor. I specialize in working with individuals with Autism and their families. This has been a long journey, but such a rewarding one.

Last year, I was chosen to give a presentation to fellow professionals. I had one and a half hours to fill. I wanted to speak about something I was passionate about. Easily, I narrowed my focus down to Autism, however, I did not want to speak of facts and figures, I wanted to concentrate on the individual. From this idea, the title “What I really wish you knew” was borne. I interviewed 5 individuals with Autism Spectrum Disorder (ASD) and asked them a series of questions with the intention of hearing what they really wish the world knew about them. I used my place of privilege to let their voices be heard. It was an incredibly powerful and humbling experience for me.

My hope for this article is to highlight the information I was given, and share it with a wider audience. Before I delve in, I would like to once again thank the individuals for sharing their stories and experiences with me. Without their bravery and voice, I would not have anything to share. I would also like to acknowledge that ASD is a spectrum and there are varying and different experiences; these are merely the experiences of the individuals I interviewed.

Language Matters

The first thing I would like to address is that of language, often there is some discomfort when trying to know how to address a person on the Autism spectrum. I acknowledged this right away with each of the individuals I spoke with and ask them for their preference. The answers were as varied as the individuals:

Person First language, the person before the diagnosis

______________ has Autism

I don’t love being called Autistic

Neurotypical refers to someone without ASD

“ ‘Neuro Diverse’ drives me batty. If I am different from you and you are different than me, then why are we not both referred to as ‘neurodiverse’ “?

I refer to myself as an ‘Aspie’

I am a person with Asperger’s, but I don’t introduce myself to others as someone with Asperger’s right away.

Being on the spectrum, a person on the spectrum

How Do You Define Autism Spectrum Disorder (ASD)?

My first question was to ask each individual, “What ASD means to them?” Their responses highlighted the unique perspective of each person:

Complicated

“It is hard to describe, cause I never thought about it, it is something I have to live with.”

Sense of pride

“Autism means ‘just being you.’ I am unique in my own right. We have gifts as well.”

Sense of indifference

“Honestly, it doesn’t mean anything to me. It is a scientific title given to a different way of thinking that helps people who don’t think that way understand it. I have no personal attachment to it. It is thing that exists and I have it.”

A different way of thinking

“I think differently and have a different perspective on life; when people have a problem, they don’t see a different solution. When I look at that problem, I can see a different solution.”

Still more to learn

“I don’t think that anyone has a good idea of what ASD really is; I don’t think any of us really know enough.”

I asked one of the individuals about having a label as someone on the Autism spectrum. They replied, “Labels are not necessarily there to hurt, labels are there to help and let others know what they are dealing with. If you walked into a store and saw a jar of peanut butter without a label on it without ever seeing a jar of peanut butter, you would be like, ‘Ewww, what is that gross brown stuff?’ But, if you walk into a store and see a jar of peanut butter with a label on it, you will know what you are getting; you will think, ‘Oh butter with peanuts in it…I think I will try it.’ Labels help you know how to help the other person.”

How Do You See Yourself As An Individual With ASD?

Keeping in mind the label of ASD and what ASD means to the individuals, I asked, “How do you view yourself?”

As a person

“I view myself as an ordinary person, to be honest sometimes I am paranoid, but mostly I am a normal person.”

“I view myself as an individual. I am a young person with ASD, without it, I would think differently, but I don’t know how it would affect me. It influences me, it doesn’t define who I am. It affects the way I interact with others.”

Advocate

“I am speaking on behalf of others and making this world a more inclusive and diverse society. I want to take out the word ‘normal’ and use ‘diverse.’”

The Challenges of Living With Autism

Changing direction, I asked the individuals, “What are some of the challenges of living with ASD?”

The list was long and varied:

Communication and the complexities of text

Not understanding boundaries in friendships (Ex. How much can I call/text you)

Focusing on things too much

Getting stressed too much

Not being able to sleep

Experiencing sensory overload

Social isolation

Perseverating on what I did that was “socially awkward”

Social barriers at work, interacting with co-workers, feeling left out and not part of the team

“Anxiety gets in the way, it prevents me from leaving the house.”

Alternately, I then asked, “What are some of the strengths of living with ASD?”

Again, the list was long and diverse.

Critical thinker

Observant, I notice things around me

Good at logic

Following the rules

Being a voice for others with ASD

Attention to detail

Loyal

Dedicated

Punctual

Humour

One individual poignantly expressed: “I don’t think I have strengths solely because of my Autism, my strengths come from me as a person and how I was raised in an open-minded and accepting environment from my mom. I have always been taught to trust in instincts and think for myself.”

Advice for Parents of Children with ASD

These individuals are experts of their own experience and have much wisdom to share. I was curious to know what advice they had for parents who are currently raising children with ASD. Their answers were filled with humour and knowledge.

Cultivate acceptance

“The most important thing is to cultivate an environment where the children do not have to feel ashamed of themselves, and something they cannot control.”

Foster individuality

“Don’t try to push your point of view on them, let them think for themselves. It is useful to let things take their course, and for the child to figure things out for themselves and form their own opinions.”

Buddy System

Implement this for the first 18 years of your child’s life. Have a buddy to walk with you who is a few years ahead and can help teach and guide.

Don’t worry about eye contact so much

“Lack of eye contact is not the end of the world. They understand what you are saying and are paying attention even if they are not looking at you. For me, eye contact seems forced, it feels uncomfortable and not normal. I give eye contact depending on the conversation and how vulnerable I have to be. Often I am looking past your head or at your hat, not directly looking at your eyes.”

Get support!

Parents need a team; they need networking and connections. “Remember to choose your battles with ASD, geeze, you are going to have a lot of battles.”

Use technology as a tool

Technology can be used for communication and for connection

How to Connect with Individuals with ASD

As a counsellor, I was curious to learn how I could become a better counsellor for individuals with ASD. However, I believe that the answers are applicable to a wider audience as well. I was both humbled and motivated by the responses.

Be genuine

“Be as genuine as you can be: people with ASD can tell when you are lying.”

“Make it clear you want to help and that you care, just because you cannot see my feelings, doesn’t mean you cannot hurt them.”

Be patient

“Don’t assume you know what I need. Give me wait time to formulate on my own. I have more brain cells than you do, give me time. You cannot expect to see progress every day.”

Don’t try to ‘match make’ friendships!

“We don’t necessarily want to meet others with ASD, they can be annoying. We don’t necessarily want another special needs friend, because sometimes people with special needs don’t have the same special needs as you and you don’t always get challenged.”

Try using ‘invitational’ questions:

What would it be like if…?

Imagine if…?

What do you think would happen if…?

Trust must be earned!

“I have a lack of desire to express my emotions due to fear of being judged. With ASD, trust is earned, it is difficult to earn and easy to lose. We think differently, we don’t automatically think of family and friends to be trustworthy. You need to prove that you can be trustworthy.”

How To Advocate For Individuals On the Autism Spectrum

Not only did I want to focus on helping professionals, but I also wanted to hear how everyone can become better advocates for individuals with ASD. The answers spoke of inclusion, acceptance and belonging.

Cultivate acceptance

“Don’t use ASD as an insult…Don’t think less of us because we have Autism. Teach kids with ASD to accept themselves, and teach kids without ASD to accept everyone.”

“Stigma is damaging!”

It is about relationship and connection

“Talk to us, not about us, just like everyone else. Talk to our family and friends.”

“Any success is about relationship. Rapport is key. Getting to know someone and building that trust over time. We can best be reached through our interests.”

“Ask the individuals themselves how they want to be advocated for. We each have a personal preference of how we want to be advocated for.”

Remember each person’s uniqueness

“No 2 people with ASD are the same. Everyone without ASD is not the same, so too are people with ASD not the same.”

Listen

“Take time to listen to them because they have so much insight even though they think differently than you.”

What They Really Wish You Knew

Lastly, I posed the question that was the title for my presentation: “What I really wish you knew.” The final words were theirs, and their answers showed the humanity we all share.

I am paying attention

“Sometimes it seems like people with ASD are not paying attention, not looking at you, but believe me, they are! We are listening to everything! If every spy in the world had ASD, that would be pretty dangerous!”

I want real friendship

“I wish I was told in school that there are differences between friends and acquaintances. When a relationship is forced, they are acquaintances but if it is genuine, then it is a friendship.”

I am doing the best that I can

“Autism is not an excuse for poor behaviour. We can’t hold ourselves to the standard of ‘normal’ people, but we can hold ourselves to the same moral standard. We can’t use ASD as a crutch. We need to take responsibility for your actions.”

Conclusion

Again, I want to thank the individuals for sharing their voices and experiences with me. It is my hope that their words help foster change, acceptance, and inclusion for everyone. It is my desire that we continue to celebrate diversity and acknowledge the ways that everyone is unique and has the right to love and belonging.

It is my desire to be able to walk alongside individuals, couples, families, and supports of individuals with Autism Spectrum Disorder (ASD) as they go through life in the various stages. If you’re impacted by ASD, I’d love to spend some time with you walking your journey. You have so much to offer, and I’d be honoured to be a part of it.